The world has stopped. The unthinkable has happened and we’re in crisis mode, trying to get our heads around this ‘new normal’.
I’ve been here before.
No, not exactly like this, obviously. But almost five years ago, my world stopped when I finally admitted I couldn’t teach anymore. I’ve been adapting to my new normal ever since. It’s been a bumpy ride, but there have been many surprising blessings as well.
Learning to be. This is a big one. We are so inundated with messages telling us we need to be doing something all the time. There’s a culture of busy-ness, where the more you’re doing is like a badge of honour. When you have a chronic illness, that’s not really an option because the fatigue, among other things, is so killer that You. Just. Can’t.
So you spend a lot of time at home, sitting around, isolated, without a whole lot of options for entertainment. Sound familiar? I’m sure it’s a new experience for most healthy people, and it can be uncomfortable just sitting in your own skin sometimes. Or maybe that’s just the MS. 🤔
But just being, instead of always doing can be a wonderful opportunity to get real with yourself and figure out what’s really important. We’ve been conditioned to believe we need to be working, be productive, be entertained, be adventurous, be travelling , be consuming, be socializing.
We’ve forgotten that sometimes it’s important to just BE.
When you stop doing and sit quietly with yourself, your mind has space to process. This is why meditation has become so popular. But you don’t even have to be that organized about it. I’m not knocking meditation in any way, I’m just suggesting that you pay attention to whether you take any time during your day to stop doing and just BE.
Staring at nature is my go-to for times when I need to stop and be for awhile, even if it’s just out the window, or the nature channel on TV. I guess that’s technically doing something but the mental health benefits outweigh any slicing of that proverbial hair.
We’ve been running on the societal treadmill for so long that doing nothing, just BEING is a difficult thing for many people right now. I get it. Like with anything though, a shift in perspective can change this strange situation we’re finding ourselves in, into an opportunity to examine our values and decide if we really want to go back to the “old normal”.
As much as I miss teaching, I am grateful every single day for my many blessings. Learning to be comfortable with just being and not doing all the time has helped me enormously in accepting my new normal. I hope it helps you too.
Just be.
Look what you can see when you stop doing for a few minutes. Just be. Photo credit: Amanda L. Callin
It has been far too long since I’ve published anything but this article is important enough to share. If you allow your fear to spiral out of control, that lowers your immunity and makes you more susceptible to getting sick.
Stay informed, but focus on connection and gratitude. Turn off the screens and get outside. Wash your hands, and stay home unless it’s essential to go out. Stay safe and healthy out there!
At the beginning of June, I celebrated the first year of my blog. It was a huge step for uber-private me last year but the response once I finally faced my fear and hit publish was unreal. I can’t believe I have over 500 followers. More importantly, I can’t believe the support I’ve received and the friends I’ve made in this wonderful community. I’m so grateful. Thank you all. 💕
On this day four years ago, I received my MS diagnosis in the morning before going back to school for the last afternoon with my class. I didn’t know it would be the last afternoon I would spend as a teacher at the time.
It’s been an interesting journey, to say the least. The physical symptoms, especially the fatigue, stopped me teaching but the mental gymnastics associated with being chronically ill really stopped me in my tracks.
Fear, grief, anxiety, depression, guilt. Oh, the guilt! Learning to say ‘I can’t’ – especially to my children, forcing myself to stop when I ‘should’ get a little more done, unable to enjoy the good days because I ‘should’ be working.
I’ve learned to mostly maintain perspective when the anxiety and depression hit because I know it’s temporary, no matter how black. The fear hits pretty strongly when my body does it’s weird party tricks. (numbness, tingling, burning, buzzing, dizziness, tinnitus, spasms, trembling, pain and the fatigue that courses through my veins. #msawareness)
But life is scary for everybody in one way or another. Perspective.
The guilt has been the nastiest of the negatives. It comes up over and over and I’ve struggled to gain the same perspective, especially on the good days. I’d love so much to be back in the classroom that when the uglies lessen a bit, I forget how bad they are and feel I should at least try to go back to work. When they inevitably reappear, I remember why I can’t do the job I love so much.
Four years on, I’m done with the guilt on my good days. I won’t compromise the health I’ve regained since I stopped working by forcing myself to go back to work. And I won’t waste the bonus time I do get feeling guilty anymore, dammit! So there, MS. 🤗 From now on, I’m doing ‘jazz hands’ any time the guilt creeps in – haha!
This day marks a milestone for each of our younger children as well. After knocking our socks off at her Variety Show on Monday singing ‘Defying Gravity’ – (check out my instagram or facebook for the video), our youngest is finishing her last day at elementary school. It’s truly the end of an era, as we started there an unbelievable 15 years ago when our eldest was in kindergarten.
Our son is finishing his last day of high school, heading across the country to study Economics at Western University in September. Needless to say, we are incredibly proud of his achievements so far and excited for him, but there will be a big hole that will take getting used to. It’s all as it should be and we can’t wait to see where he goes with his life. This kid is motivated!
Finally, our eldest got her first car so now we have our own taxi 😉 she’s embarking on a whole new level of independence and financial responsibility. We have no doubt she’ll manage her shiny new car with her usual attention and responsibility, and have lots of great adventures in the years to come.
Not much to report here, except that the gnomes and ogres are still having their dance party. I’ve just tried to stay busy doing jobs around the house when the energy permits, getting outside every day, reading a ton and binge-watching Outlander in anticipation of season 4 coming out on Netflix.
I started reading a book I started in the summer, and I had to share it. If you need some perspective, and some good laughs, I highly recommend Furiously Happy by Jenny Lawson. She is also known as The Bloggess and has a thing about taxidermy, as well as an interesting perspective of the world from living with mental illness her whole life.
With chapter titles like “Koalas are Full of Chlamydia” and “Voodoo Vagina”, this is not a self-help book. Yet somehow, it’s very helpful in its own bizarre way. Here are some nuggets from the sections I’ve been reading:
“My psychiatrist told me that when things get rough I should consider my battle with mental illness as if I were “exorcising a demon” and I was like, “Well, no wonder I’m failing so miserably. I’m shit at exercising.”
“Like my grandmother always said, “Your opinions are valid and important. Unless it’s some stupid bullshit you’re being shitty about, in which case you can go fuck yourself.”
“Did you know that kangaroos have three vaginas? Because they totally do and that’s probably why they’re always hitting each other. They probably have PMS every damn day of the week. But on the plus side, kangaroos have plenty of places to smuggle things, with so many holes in their bodies. In fact, they’re so full of holes it’s sort of shocking that all the kangaroo doesn’t just leak out.”
Okay, so she’s random. Maybe that’s what I’m responding to, along with her complete honesty about living with mental illness. I have tremendous empathy for people who live with mental illness throughout their lives. This is new for me, depression was not something I had experienced until two years ago, and so far it has come and gone within several weeks – fingers crossed this time. Living with this feeling day in and day out over years, takes a special kind of fortitude.
It is only in sharing our experiences and being honest that we will break the stigma of mental illness. It is the most rampant of all the invisible illnesses, and it’s time that it was taken as seriously as physical ailments. There should be no shame in admitting that you’re struggling, and it’s important to reach out and ask for help if you’re not coping. You are not alone.
Do you have any books about depression, anxiety or other mental illness that you recommend? I’d love any suggestions in the comments. Links for the book below for your convenience.
Have a wonderful week!
❤️ Amanda
Furiously Happy: A Funny Book about Horrible Things
Walking the tightrope of ms relapse prevention and symptom management while juggling life stress, heat intolerance, sensory overload, the ogre of depression and its craptastic partner-in-crime, anxiety.
We spent an incredible weekend in Vancouver, going to see the Psychedelic Furs, a band I started listening to in 1985, the year I met my husband. Nostalgia aside, they were maybe not the most exciting live band but we had a whole second show play out in front of us. It ended with a very eccentric, obnoxious man throwing his drink in his ex’s face, spraying all of us nearby. Oh, the drama.
Going to Vancouver usually stresses me out with all the traffic, the dreaded George Massey tunnel, the smells, the noise, the people everywhere. The chaotic energy of a big city is exhausting but it’s worth it to spend a night away watching live music with my husband.
This time traffic was mellow, even on a weekend at the height of summer. Everything fell into place beautifully everywhere we went so there was little stress and the monster was quiet so I felt pretty great, all things considered. Happy hour cocktails at the Cactus Club may have helped a bit, too. 🍹
Even the drive back out to the ferry, because we left the city early and went to check out the new mall, Tsawwassen Mills, was a fun, stress-free adventure. I’m not a mall rat and typically think a mall is a mall is a mall but they have done a very thoughtful job of incorporating First Nations artwork and unique elements that make walking around the ginormous space a mall experience unlike any I’ve had before.
First Nations metal wolf sculpture
Part of the joy of being an island-dweller is the hurry-up-and-wait experience of riding the ferry. I’m mostly patient and can amuse myself pretty easily but we all know how hot this summer has been in the northern hemisphere. Sitting in a truck on the end of a man-made jetty covered in concrete, full of metal cars and huge semi-trailers is a special kind of torture for every traveller.
Heat sensitivity is a common symptom of multiple sclerosis. Being the annoying mofo that it is, my body can tolerate heat or cold just fine most of the time. Until it suddenly can’t and all hell breaks loose. I think my thermostat’s broken.
So, my sweater is hanging off the sun visor shielding my body from the sun, doors and windows all open to catch the cool ocean breeze, all is well. Then the wind dies, the sun’s still beating down on me through the side window and a mushroom cloud of heat wafts up from the pavement.
Knock knock. Who’s there?
Hot, too hot.
Brain frying, can’t think
Panic starts, ears ringing.
Hello Anxiety.
Anxiety is another special gift the monster has given me in the last few years. It is closely related to depression in that they share the all-encompassing feeling of doom. The only thing that makes it controllable is knowing that it is a result of the damage in my brain, it is not real.
On the tarmac, I ended up going into the relative cool of the marketplace, to be faced with all the other overheated humans seeking relief.
Hello Sensory overload.
Tune it out. Blinders on. Focus on stationary objects.
Jewelry. Oh, pretty. Slowly inspect.
Cool down. Calm down.
Sea salt scrub. 50% off. Sure!
Hot, too many people.
Stuffy. Loud. Too much.
When I got back to the car, we had the bright idea of using the air-conditioning. Oh, sweet relief! I don’t love idling a car for any longer than necessary but when it comes to being either environmentally responsible or saving my brain and body from total meltdown, I will be unapologetically selfish. Please remember this if you’re tempted to judge someone for idling their car in the future. It can be a case of life or death for some people in this kind of heat.
People always worry about the dogs but, you know, humans.
Just after we boarded, a camper van got stuck partway on to the ferry, delaying the other cars and ultimately, our departure as they eventually had to back off the ramp. I could feel the spinny, bubbly feeling beginning again in my head that happens when my thermostat’s awry and I overheat. Then, anxiety prickled its knives that I was stuck in this hot car with no air moving for who knows how long and idling your car on the ferry isn’t an option, so no air conditioning.
Sensory overload or not, up I go just until the boat starts moving. Normally we stay in the car the whole time to avoid the crowds as I’ve always had enough after two days in Vancouver but again my thermostat was in control. I go up the stairs straight into the line-up already building for the buffet.
I quickly veer myself into the small hallway by the chief steward’s office and prop myself against a window, watching the hordes of people boarding and lining up. I try to enjoy the enthusiasm of the young Japanese tourists on a ferry for the first time. Their excitement is adorable and appreciated.
Then they swarm around me to look out the window and take pictures. Of the ugly piers.
Over my head.
Okay. Breathe.
They’re gone.
Another group.
Wait. Breathe. The ferry will be moving soon.
One window further over. Look out at the water.
See the diamonds dropped by the sun
Sparkling all over the water.
A bird, diving.
When will the boat move?
Look back at the growing noise.
Buffet line has sealed off my exit.
Swallow down the fear.
Irrational.
Line will move. Boat will move. Time will move.
Please move!!!
Breathe.
Just breathe.
I am only grappling with one tentacle of the octopus of anxiety. Many people are paralyzed in their lives, unable to function because they are crippled by the many facets of this mental monster. Yet again, there is still such a stigma about mental illness. I wanted to share a small glimpse into what the experience is like for me, just to open the discussion and share information to spread awareness.
Thanks so much for stopping by. I always appreciate any comments or insights about my posts but if you’ve taken the time to read it at all, I am honoured, and I appreciate it so much.
Walk a Myelin My Shoes 